Jargon Busting? Maybe...

When you get into the realms of Special Educational Needs and Disability (SEN/D) a whole new language opens up in front of you.  At first, a decade ago, we went along to meetings where 'professionals' (or service providers) were spouting off terms that we had never heard before... and so the struggle to educate ourselves in this new environment and language began.  At the outset we (naively) believed the 'professionals' would know best as they would have experienced the difficulties we were talking about many times before and J is our only child.  This was a major mistake.   We should have been warned that many 'professionals' have such a honed area of expertise that they couldn't see J as a whole person - merely talk to the particular area in which they prided themselves in knowing alot about.  Rarely do the 'professionals' we meet see J as a whole, rarely do they go away and seek information prior to subsequent appointments and rarely do they explain, properly, what in the world they are wittering on about.... for that is what it sometimes (often) seems like.

Over the years, we have learned a huge number of TLAs (Three Letter Acronyms) and shorthand speak for 'things' that relate to J.  Starting in pre-school with SENCo - Special Educational Needs Co-Ordinator making an IEP - Individual Education Plan.  Moving through to LA - Local Authority and 'professionals' such as EP - Educational Psychologist, SLT (SaLT or S&LT) Speech and Language Therapist, OT - Occupational Therapist, PT - Physiotherapist.

Later came the dxs (diagnoses), treatments, investigations, assessments and discussions about difficulites: DCD - Developmental Co-ordination Disorder, ASD - Autism Spectrum Diagnosis/Disorder, AS - Asperger's Syndrome, LD - Learning Difficulties, EDS - Ehlers Danlos Syndrome, SPD - Sensory Processing Difficulties/Disorder, CAE - Childhood Absence Epilepsy, AED - Anti-Epileptic Drug, SI - Sensory Integration, MRI - Magnetic Resonance Imaging, EEG - Electro Encephalo Gram, CE - Conductive Education, VF - Video Fluoroscopy, SIPT - Sensory Integration and Praxis Test, WISC - Wechsler Intelligence Scale for Children, CAMHS - Child and Adolescent Mental Health Service, CCG - Clinical Commissioning Group

Along the way you hear of other terms: DS - Down's Syndrome, CP - Cerebral Palsy, ADHD - Attention Deficit Hyperactivity Disorder, ADD - Attention Deficit Disorder, LAC - Looked After Children, OCD - Obsessive Compulsive Disorder, BI - Best Interests, CoP - Court of Protection, CAF - Common Assessment Framework, MH - Mental Health, EBD - Emotional and Behavioural Difficulties, PMLD - Profound and Multiple Learning Difficulties, SW - Social Worker, PA - Personal Assistant, VI - Visual Impairment, HI - Hearing Impairment, NT - Neuro Typical

Then the terms relating to legal challenges regarding education and disability:  SSEN - Statutory Statement of Special Educational Needs,  WD - Working Document, FTT - First Tier Tribunal, UTT - Upper Tier Tribunal, JR - Judicial Review. From 1 Sept 2104 SSEN will be transitioned to EHCPs - Education Health and Care Plans, LGO - Local Government Ombudsman, PHSO - Parliamentary and Health Service Ombudsman.

Not forgetting the DLA - Disability Living Allowance, CA - Carer's Allowance, PIP - Personal Independence Allowance, DSA - Disabled Student's Allowance, ESA - Employment and Support Allowance.

Unfortunately, this is in no way a comprehensive list of terms that are regularly bandied about in relation to Children and Young People (CYP) like J... it's a quick list that has come from a twitter chat (where TLAs come in useful to maximise the 140 character limit) in which someone expressed wholly understandable confusion around the terms being used.  I'd started this post ages ago but am now wondering if perhaps it may help a bit?  Whatever, it's being posted and can be used/not as suits.

Feel free to add more terms through using the comments below!

Wrist pain and KT Tape

A frequent manifestation of our Ehlers-Danlos hypermobility is wrist problems... clicking, grating, subluxing (partial dislocations), pain, aches and weakness.  Mine has been persistently bad and I was looking for 'something' to give my left wrist support, without thickness, that my skin would tolerate and allowing the joints to keep mobile... also required was a means to support the joint overnight without my fingers swelling.  Oh, and it had to be yellow!  So, not much to ask!?

Luckily, twitter was a good source of assistance and soon a conversation was taking place with the helpful tweeter @KTTapeUK.  When it was confirmed that a yellow tape was available, excitement rose.  Even better, we were sent a few strips (with instructions, wrist bands, sweets and a sticker) to try out. 

To make sure we knew what to expect, we watched the youtube video which covered KT Tape application where the problem is wrist pain.  This, together with the printed sheet that came with the tape, was sufficient for us to feel confident about applying the tape.

The tape was prepared first... cutting and shaping and, as it was my wrist that was to be the guinea pig joint, an able helper (husband) was co-opted in to help.

Following the instructions carefully, the tape was applied first to the top of my wrist.  Then the other side and, finally, up from the back of my hand onto the lower arm.

Next came the 'test'... would it help?  Would my skin tolerate the adhesive?  Would it stay on?

Answers to all the above = yes!!   Wrist stability was helped, the pain and swelling was reduced.  My skin didn't object to the adhesive (which is unusual!) and it stayed on for a couple of days.  Enough time to allow my wrist to rest and recover... and it is, as I type, PAIN FREE and in the right place.  What a great result.

KT Tape is a useful find and we'll definitely by buying some (I'll be choosing a different colour!) to have 'reserves' for future joint problems... and, having seen the yellow tape, J's agreed to try it next time he gets a persistent ache/instability.

Disclosure - we were sent the tape to try for free.  We were not required to write a blogpost and all the opinions are our own.

Clothing - Raising Awareness

Having seen a tweet from @SquarePegCIC on twitter about hoodies and t shirts using fashion to educate about special needs, some of which are hidden as not every disability equates to being in a wheelchair.  When we took a look at the site there was no yellow option, so J was not interested.  Following a twitter exchange, Lauren at Square Peg Clothing agreed to look into the colour options with her suppliers.  It was great to hear, a few weeks later, that they were able to offer yellow hoodies and J was then keen to try one. 

There are t shirts and hoodies available, in child and adult sizes with various slogans.  J had a look at the website and all that was on offer.  Athough he liked "You can't get my designer genes just anywhere", he chose the message "Somewhere over the spectrum".  This was because he likes the concept of spectra (both electromagnetic and also the 'autistic one') as well as the use of the linking jigsaw pieces. Jigsaw pieces are used by Ehlers-Danlos Support UK (which is another of his diagnoses) in their message about the various symptoms and types of EDS.


In the pictures you can see that J was very keen on the top... in fact, since it arrived, he has worn it every day!   The colour of the hoodie in the pic on the left (with J's pal Peppie in) is the best for demonstrating the shade of yellow it is - a deep sunflower, "happy" colour.

 
Today at his aquatic therapy session, which is held in a special school, J was delighted to get a couple of lovely comments from the staff and his favourite physio particularly liked the shade of yellow saying it had brightened up her day.

Initially, we had talked around the topic of whether J wanted to bring attention to himself with the slogan and came to the conclusion that people stare and question anyway so they may as well have something nice to look at when doing so... it also opens up J's lines of communication as gives him a 'topic' to use as "chit chat" which is part of his Speech and Language therapy.

The photo to the left is J demonstrating the hoodie part...  he says it's lovely and soft and keeps the chills out.   He also likes the 'pouch' on the front (which can be seen best in the photo at the top) as he can snuggle his hands in and keep them warm.

J is a slight 14 year old and we were sent a 12-13 (34" chest) hoodie by @SquarePegCIC   Taking a parent's view, the fabric is lovely and thick (80% cotton, 20% polyester) and washes at 30ºC... amazingly, given J's usually messiness, it hasn't had to be washed yet.  Hopefully, it will still look as good once it's gone through the machine.

Thank you Square Peg Clothing, this top is a great success! 

Disclosure - J was sent a hoodie by Square Peg Clothing, the opinions are our own and we have not been paid for this post.

Tinnitus - it's not just ringing in the ears!

J's experiences with hearing problems (hyperacusis and tinnitus) were acknowledged, and addressed, during 2011 when he finally got to the Nuffield Speech & Hearing Centre in London.  As it's Tinnitus Awareness Week in the UK this week, we wanted to cover his experiences with tinnitus.  

As a young child, J suffered with intermittent glue ear and used to say things which, looking back, seem to indicate tinnitus has been something he's experienced for a long time. For instance, when in the car,  he often asked if there was a motorbike behind the car when there wasn't, he'd say at night that he could hear bubbles popping and he'd often not notice he was being talked to.  His hearing was tested numerous times but it always came back as being 'normal'.  Recently he asked us why the toilet was flushing (it wasn't) when we were sitting reading in silence - it was astonishing to realise (yet again) just how loud the noise/sound J hears as tinnitus can sometimes be!

Once diagnosed, we were surprised to learn the range of sounds that can be 'heard' when someone has tinnitus.  J, once told he was not alone and that his problem had a name, was then able to express more fully the severity of his tinnitus.  He explained that at quiet times it could be overwhelming, that he could ignore it more easily if he chatted to himself and it wasn't always the same sound or volume. 

Many times, J has said "yes" or "what" when noone's said anything.  Now we know it's likely to be his tinnitus that's making him think someone's talking to him.  He also likes to have a small amount of background (ambient) sound as the noise in his head is overwhelming when it's completely silent.  He's explained that trying to concentrate on what's being said, or a task, when the tinnitus volume is high is very challenging (and tiring) for him.  

Regarding the varying sounds and volume levels of J's tinnitus, we have had a few events recently that have allowed us some insight into what he has to handle.  For instance, whilst out on a visit to a shop one weekend before Christmas, there were some Bose noise cancelling headphones in the electrical department that were available to try.  B has been 'angling' for Bose equipment for YEARS so was quick to give them a go... as soon as he tried them, he said to me "you must have a go, they're amazing".  So, I put a pair on and was suitably impressed at the reduction in background noise of the department store - in fact, it was barely audible - and this was just with the headphones NOT playing any music.  We were both astonished and applauding the 'amazing' non-sound and J had a go... well, his reaction could not have been stronger.  He grasped his ears, blanched and yanked off the headphones - it was as if he'd been burnt - his reaction was extreme and instant.  He yelled "I DO NOT LIKE THOSE" as he ripped the 'phones off. Noise cancelling just allowed him to hear ONLY the sounds in his head - his tinnitus - and it was overwhelming for him.

J wearing bone conduction headphones

Bone conduction headphones

Once home and, as is the norm here, trying to think of methods of helping J, I tweeted a twitter pal (the most lovely Vicki who tweets as @KidsAudiologist) and asked if she thought bone conduction headphones would work. As luck would have it, Vicki was at a conference with loads of other audiology bods and so she replied saying she'd ask around.  As usual, she was as good as her word and soon replied to say the people she'd asked thought that bone conduction headphones would be worth trying.  So, having searched online found Aftershokz offered some... as these are stocked by Action on Hearing Loss here we thought they'd be worth trying out.  We ordered online and J tried them out - saying "wow I can hear the music's words" and, even better, he wasn't shouting as he spoke.  He said it was "a bit odd" wearing the headphone on the front of his ears but this was much better than anything being in his ears.

Some of the solutions discussed during treatment in London had been white noise machines, special pillow speakers and ear defenders - all on offer here for 2014 Tinnitus Awareness Week.  J already has ear defenders and likes to have music playing in the background when his tinnitus is 'filling my head' as then he can concentrate on that instead. 

As J doesn't have hearing loss, finding information and support when we first started looking was quite a challenge.  Also, his tinnitus is not due to listening to loud music... however, it's no less irritating for him at times but he does deal with it in a matter of fact way (he likes facts) and did some drawings about it a while back that seemed to help him.   

J's thoughts on tinnitus are that it is "part of me, varies quite a bit and is sometimes really annoying" but he also says "now I know about it, I can think of other things and it helps me to cope".  He recently told his Speech and Language Therapist that it's like "an untuned radio - interference" and when it's really loud, that he can't block it out.  Stressful situations worsen his tinnitus and this is something we've noticed can be improved by using the techniques from his therapeutic treatment. 

Being aware of tinnitus and accepting it DOES exist has allowed J to discuss, learn about and understand methods that work for him in controlling the impact tinnitus has on his life.

J's tinnitus level today

This has been a much longer post than intended and we had hoped to include diagrams and more pictures but they're difficult to find so J did his own - this represents his tinnitus as it is right now!

Articles and organisations

There is a detailed description of the type of therapeutic counselling J undertook on pages 26 to 29 in this issue of Audacity (professional audiology publication) and it also contains another article on Tinnitus in Children on pages 30 and 31.

The British Tinnitus Association has a useful website here and we found these pages useful - About Tinnitus and Tinnitus in Childhood

StickyTape-less Gift Wrap Method

Last year we blogged about the things that challenge J at Christmas (and birthdays too).  He doesn't like wrapping paper, won't open envelopes and can't cope with sticky tape - to name a few!  So, as is usual, I have kept looking for ideas that may help out with his difficulties.

During this week, I spotted a link to a youtube film from Royal Mail who'd asked an "international gift wrapping expert" for tips.  Taking a quick look, it was apparent there may be a technique she used that could work for J.  She speeds through it quite quickly (and uses paper that clearly costs mega-bucks) but I've broken it down into steps using the pics below... and it truly was a 'speed wrap' not and 'expert' wrap that I did!  Have a look and see what you think - it may help someone you know to access presents.

Get a piece of wrapping paper that's more than 5 times longer and at least twice the width of item being wrapped.

Place item near the bottom of the wrapping paper and fold the long edges in.

Crease the paper from the item to the cut edge, then fold in the corners and crease the fold line.

Fold up the end to enclose the item.

Crease the paper at the top of the item, then carefully (holding the folded end in place) fold the whole item over.

Crease the top end, again, and fold up to enclose in paper.

Crease and fold up again.

Carefully 'flip' the gift over so the remaining paper is now facing you.

Cut off excess paper length, aiming to cut the paper wrap to just cover the package.

Crease the sides.

Open out the newly cut end and fold in the corners, at shallow angle to the midpoint.

Fold in another, slightly larger, triangle at the corners.

Fold the flap down over the gift and fold the corners back on themselves.

Secure the flap with some ribbon...

... and here's the finished parcel (yours, and the 'expert wrapper', gifts will doubtless look better!)

You can make yours pretty with a bow and dangly baubles, bells, candy canes, attached to the ribbon but this is a gift heading to our little Chihuahua, Peppie, so we went for the 'less is more' wrapping approach. Enjoy!

Handling Hairbrushing and Haircuts

So, amongst his hypersensitivities, J has a real aversion to the touching, cutting and brushing of his hair.  We long ago realised that the 'cheery chappy' ruffling of a youngster's hair by an adult was something that would send J into a flat spin.  He loathes even the slightest touch of his hair.  In fact, the lighter the touch, the more he tends to dislike it.

Hairbrushing, when it is undertaken, is a much screamed about and avoided chore.  J will not brush his own hair (usually) and is very anti 'someone else doing it'...  So, on most days, we tend to keep it to a minimum.  However, sometime, the bedhair and ruffle look is not going to be OK for heading out so we do some serious negotiations around how to get a brush through the hair.  Usually, this will entail a 'distraction' agreement such as J uses the iPad to minecraft whilst I speedily attempt to tame his locks.  The other month, things changed a bit and a step towards a solution was taken.  A friend's daughter uses a Tangle Teezer and she suggested we try one out.  I mentioned this to J (as we've tried different brush types in the past and don't want another gathering dust in the bathroom cupboard) and he said "well, if it's yellow I will give it a go".... So, my task was to source a yellow Tangle Teezer.  First stop was the Tangle Teezer website where, to my dismay, I discovered they don't do yellow brushes.  All was not lost, however, as I emailed them through their contact form and an impressively swift reply arrrived by email.  Not only did they have a special salon edition yellow brush that they had found in their warehouse, but they were offering to send it out for J!!  The parcel was swiftly delivered and the lovely Sara had exceeded our expectations by not only sending the yellow brush, but it was packed in a box with yellow tissue paper... this was met with great delight. 

The brush was inspected and set to one side and then, a few days later, J actually brushed his hair with the Tangle Teezer and said 'it's not that bad' which is high praise indeed.



Thank you Tangle Teezer for going that extra mile and finding a brush that J is willing to use.  We really do appreciate it.





Haircuts are something that we have come to carry out in a regimented way to allow J to know what to expect.  He goes to a local barber, has the same chap cut his hair and sometimes does now actually talk whilst he's there.  The whole thing is a trial to be tolerated but only on a quiet day, when he's feeling well and we've talked about it for a couple of weeks beforehand.  There is now a trigger length when he will mention he may need a haircut - when his hair whips his eyes when trampolining.  We know it's then time to start the preparation and that, soon-ish, the problem hair will hit the floor having been cut.  The barber knows all about J and has been cutting his hair for well over 7 years.  He commented the last time that J's tremors were less noticeable which is good.  In the past, at a previous barber's, the 'awful man' shouted across to me "has he got Parkinson's or something? He's twitching like mad here"... so I said "actually he DOES have a neurological disorder - thanks for sharing that with the whole shop".  Needless to say we never returned to that particular place.  For J, having his haircut is all about knowing what to expect and how long he has to manage dealing with getting it done...  We aim to go early in the day and, after a haircut, we don't plan anything else as J just wants to return home to his Lego and swingseat.

Is this sort of thing familiar to you?  How do you deal with such senstivities?  Share your ideas and solutions in the comments below... 

Battling on...

It's a way of life for us that things are not as simple as we'd like.  Recently, things have become even more of a challenge... and not because they've changed (much) but that, once again, we are forced to read *things* in black and white.  We should be used to it as over the years, J has been assessed and tested many, many, many times but only a minute proportion of these 'evaluations' have come with a follow up of support and assistance.  What's worse is that the 'tests' are all about showing how difficult things are... there's little that's done to highlight the strengths and delightful characteristics J demonstrates on a daily basis.  This, in itself, is soul destroying.

Add to this the frustrating postcode lottery that means that a few miles to the West of where we live, things would be so different.  This is what is reality for us within the Midlands UK.  Suffice to say, where we live has been a disaster in terms of the interventions and assistance J has been offered... and it's now apparent that "because he looks normal" (whatever that may mean) he is even more disadvantaged as 'people' think he *shouldn't* have the severe problems he has.

The catalogue of matters we've dealt with is a long one but does include health and education.  We know alot about J and what will work for him but, for the most part, this is not given any credence.  Instead of being supported in our goals for him we are blocked by the very people whose job should be to assist.  Slopey shoulders abound with no-one wanting to raise their head above the parapet to assist and/or take responsibility for actions (or in J's case their INaction).

It's not all doom and gloom, support and advice has come from charities and other special needs parents.  But these are people that really *know* what we face and see the challenges for what they really are.  Most of the professionals (or 'service providers' as one parent told me to think of them <- a great tip, by the way) seem to do the bare minimum and, in some cases, actively work to prevent support.

Using the internet is great for linking up with similar people and information finding is easier as a result.  But local services should not be about us finding out what there is supposed to be available and then battling to get even a morsel of understanding... and we're not blaming this on austerity or the current administration.  This has been our experience all along - since J was 3... a whole DECADE.  It's just not good enough and the battle is only ongoing because his problems will NOT diminish (although, of course, we hope they might) and we won't be here forever.  It's worrying and wearing.  But we will persist.

The support of twitter pals has been fantastic... and the resources we've been able to learn about and access have been worthwhile.  But how much easier and better it could have been FOR J if support and understanding, as the default, was offered.

PLEASE don't judge people by how they look.  Don't presume to know what's happening in their life... and, if you can, please offer a thought for those who have a less straightforward run at life.  One day, in the future, it could be you or your loved ones facing similar challenges and demands.